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From Where I Sit


Luge Ride to the Weekend

I'm writing the morning of the start of the 9th Nevus Outeach Conference.  In ways, it's very much like past conference times, in other ways it's not.  Some of my inspiration is missing, but I can only blame myself for that.  Also I have been distracted.  There is so much to do still.  There is not really a conference chair this time, because we opted to do things in a different way.  We won't know absolutely for sure if it was the right decision until the dust settles.  That's a little scary.  It feels like I have stepped onto a luge and am careening out of control, down an icy slope, all the while picking up speed.

But we think it's going to be a great conference!

So I got a look at the weather report, and, although for some unknown reason my computer is reporting the temperature in °C, a cruel joke, chance appears to be on our side this week.  Nothing over, well, 95°F, and partly cloudy each day through the end of the week.  That may make us want to move the Dads' session out to La Terraza in the shade of the afternoon.

We have a great slate of selfless speakers, who by the measure of their willingness to share their renowned expertise with a lay audience over a holiday weekend, are some of our biggest champions.  But of course there is so much more to measure them by, too.  We ask a lot.  They give a lot.  We need a lot.  A hearty "Thank You" to all of them before we even get started!

The heart of the meeting is in all the patients and their families who come to Texas to attend.  This year it's 327 people from 14 countries.  103 people with nevi.  We think that's pretty impressive for a rare and orphan disease.  There was a time when a person with a large nevus would most likely live their entire life without meeting another.  Nowadays, you have to be living under a rock for that to happen.  We like to think we helped that along.  That's why we call our conferences "a family reunion for the family you never knew you had."

 

Conference Photo from 1998

 

 

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Conference Photo 2012

 

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They Said it Wouldn't Happen

Still floundering here. Undoubtedly this will be a permanent state until after the conference and the radiosport thing are over.

I managed to get nearly all of the daily recap blogs done for the Freewheel, so I will distribute them bit by bit through next Saturday. There is some really fun stuff in there, and I hope you enjoy it. I hope it's not too much. Read more...

Up For Air

Just received this note last night:

Mark,
I agree with your thoughts .... We will talk once you come up for air.
Ash

It is really great when people understand.  In this case it's Dr. Marghoob and ongoing conversation about how to make the best registry for people who have congenital n Read more...

On Our Way

I am pleased to announce that the team left for Comanche, Oklahoma this afternoon.  I have stayed behind because I have another professional obligation in the morning, conducting Haydn's Te Deum for Marie Therese for the Oklahoma International Mozart Festval "Mozart Sunday" Showcase event.&nb Read more...

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     Mark Beckwith

Executive Director
Nevus Outreach

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